Patient Story of journey through pelvic pain
My name is Krystal and I want to share my story in hopes it will help other women. I am a wife to a wonderful husband and mother of two beautiful children. My husband and I had been married for about a year and three months when I got pregnant with our first child. Our intimate life was great prior to this, but during my pregnancy I started experiencing pelvic pain, especially when my husband and I were together. At the time my obstetrician would tell me that it was more than likely a lubrication issue. She suggested several different lubricants, but it never seemed to take care of the problem.
After my daughter was born, the problem seemed to get worse, making it very difficult for me to be intimate with my husband. After suffering for about six months I finally made an appointment with a pelvic pain specialist I was familiar with, hoping to get answers and some relief. Being only 30 years old, I knew that something was wrong. I needed this not only for myself but for my marriage. My husband was trying to understand, but he was starting to wonder if I was no longer attracted to him anymore.
When my husband and I were intimate, it felt like there was a “barrier” not allowing him to penetrate all the way through. The best way to describe it was like having to squeeze between two big boulders. It was so painful that I would end up crying and asking him to stop (which of course totally kills the mood). I was diagnosed with interstitial cystitis. Interstitial cystitis, also called painful bladder syndrome, is a chronic condition that can cause pelvic pain.
I was then started on a bunch of medications, taking them three times a day. I tried this regime for several months with no relief of the symptoms, and the medications made me feel horrible. When I went back to the physician’s office, it was decided that I would stop the medications and come in every other week to have medication injected into my bladder and receive massage therapy. While looking for some kind of relief in order to have a normal intimate relationship with my husband again, there were even times that I had injections in my vaginal walls.
By the time we were expecting our second child (one of the few times I could tolerate the pain long enough), I had been seeing the physician for almost two years. During those two years I endured many treatments, hoping that if I gave it enough time that I would finally start feeling some relief. There was no change in my symptoms, and my intimate life with my husband was getting worse and worse.
I canceled upcoming appointments because I didn’t want any undue harm coming to the baby. After my son was born I didn’t return because there was no sense in paying for something that I was not benefiting from.
My love life with my husband was basically null and causing a strain on our marriage. It was very frustrating because when I reluctantly allowed myself to get intimate with him, we both would get upset. I would get upset because I couldn’t give him what he needed and he would get upset because I was in so much pain. I had even gotten to the point that I didn’t want to be touched in a loving affectionate way by my husband because I knew where it could lead. I just didn’t want to deal with the pain. It was like I had shut myself off. My poor husband kept thinking it was him, that I no longer loved him, I was no longer attracted to him. I would try to explain to him, but it was difficult to understand, especially since he couldn’t see or feel it. My husband is a very good man, a faithful man who loves me very much, and I know he would never stray, but I was even to the point that I almost wished he would. As awful as that sounded I wanted him to get what he needed since I couldn’t give it to him. I hated whatever this problem was that I had.
When my son was 30 months old, I started researching interstitial cystitis again in order to seek a second opinion and treatment plan. During my research, I came across Norton Healthcare’s Pelvic Health Program. It was just what I was looking for. I called and spoke with Missy Ulfe, R.N., the program’s nurse navigator, and I spilled my intimate personal and medical history to her. I remember even apologizing for telling her such intimate details, but she was very understanding and kind. She explained that they had a physician who might be able to help me: Dr. Ali Azadi, a urogynecologist. Missy gave me his number to Norton’s Women’s Specialists – Urogynecology and suggested that I make an appointment with him. Missy then asked if I had ever seen a physical therapist. I was a little puzzled by this question, and I told her that I had seen a physical therapist for my knee but not for pelvic pain issues. She then explained to me that there are physical therapists that actually specialize in pelvic issues. Hopefully with Dr. Azadi and physical therapy I could actually get some relief and a normal sex life again. I was looking for answers so I made the appointments.
When I had my appointment with Dr. Azadi he was very kind and understanding to my frustration. He explained to me that pelvic pain is not only experienced by older women. He said that he sees many young women who have had children — especially more than one — experience pelvic pain due pelvic floor muscle spasm. In fact, it’s very common and often ignored. Overall one in four women is affected by some kind of pelvic health disorder. This was amazing to me because I felt like such a minority.
After testing, exams and answering questions, Dr. Azadi felt that I didn’t really have interstitial cystitis and that if I did it was a very mild case. He then suggested I see a physical therapist to help loosen those muscles, as well start taking a pelvic health medication.
When I had my first appointment with the physical therapist who specializes in this kind of issue, I was amazed. When she did my pelvic exam she felt my “barrier” or “boulders” and I then knew it wasn’t just all in my head. I have been working with her since May and it continues to improve. I am finally seeing a light at the end of the tunnel. With the medication and physical therapy I am finally able to tolerate intimacy with my husband — finally after almost six years! I am finally able to say that someday I will really be able to enjoy those intimate times with my husband.
I am so glad that I didn’t give up and didn’t just take one answer at face value. As patients, we need to make sure we are active in our own health care. If something isn’t working, speak up. If that doesn’t work, look for a second opinion. It is your health. No one else knows what you are going through but you. Don’t suffer in silence!